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Neuroendocrine Cancer Awareness Network Inc

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Nonprofit Overview

Causes: Cancer, Cancer Research, Digestive Diseases & Disorders, Health

Mission: The Neuroendocrine Cancer Awareness Network (NCAN) is a 501 (c) (3) non-profit organization dedicated to raising awareness of Neuroendocrine Cancer, Carcinoid and other types of tumors. By providing support for caregivers and people with NETs, and funding for NET cancer research. Since 2003, it has been our mission, or as we like to say, our passion, to educate and support the NET community as a whole. That’s our thing.

Results: Because neuroendocrine tumors (NETs) are rare cancers with no celebrity spokesperson or widespread recognition, patients need to be their own best advocates. You need to be aware of all the new diagnostics and effective new treatments available. If you are, how do you sort out what’s right for you? If you aren’t, how can you get informed? That’s what we’re here for. For the past 15 years NCAN has provided information and support to NET patients and caregivers through e-mail, our web site, and our toll free hotline. Whether you need information or a friendly person to talk to, we’re always here to deliver. You can reach us at 1-866-850-9555, 7 days a week, 365 days a year, from 9 am to 9 pm EST. Either a patient or caregiver will answer your call. It’s important to us that you know the person on the other end of the phone understands first-hand about NET cancer. Or, if you prefer, email us at info@netcancerawareness.org . We answer all emails within 24 hours. You’re not alone. We’ve mailed out several thousand free information packets worldwide. There’s a packet waiting for you. Just let us know when you’re ready to receive it. We’ve also provided many support groups around the world with information, merchandise, and awareness items. And we’re just getting started! The NCAN organization has produced over 60 conferences around the country as well as regional conferences designed for local audiences. These conferences help keep patients and caregivers up to date on information impacting the decisions made regarding their care, including new diagnostics and treatments available. These conferences are also a great opportunity to connect with other patients and caregivers who understand exactly what you’re going through, first hand. We also exhibit at medical trade shows and medical meetings such as Healing NET Foundation Summit, NANETS, ASCO, ASCO GI, Digestive Disease Week, Interventional Radiology, The American Association of Endocrine Surgeons, and local fairs. NCAN also produces a number of fun, family-friendly fundraising events throughout the year. The Annual Celebration of Life Gala, Strides for Stripes Zebra Walks and Virtual Walks, and Comedy for a Cure to name a few. Check out our calendar of upcoming events at netcancerawareness.org and get involved! We need you, to do what we do. NCAN'S Nationwide Chapter Support Groups are ready to share their experiences with you! These are places to get info NCAN works closely with the pharmaceutical companies to get the most updated information regarding treatments coming in to clinical trial and the pipeline. NCAN is a proud member of the World Pancreatic Cancer Coalition An NCAN board member has served as an adviser on the following boards: - SPORE External Advisory Board as a Patient Advocate 2011 - present. - NANETS from 2009 - 2016, - Healing NET Foundation 2014 -2016

Target demographics: Neuroendocrine Cancer Patients, their families, caregivers and medical professionals

Geographic areas served: Locally, Nationally, & Globally

Programs: We have a toll free hotline opened 7 days a week 9 am - 9pm EST. The phone is answered by a Patient or Caregiver at all times. We send out free information packets to anyone interested. NET Conferences for Patient, Caregiver, and Medical Professionals. Our NET Patient conferences , and Medical professional events across the county!

Community Stories

131 Stories from Volunteers, Donors & Supporters

2

Client Served

Rating: 5

I have been a nurse for 26 years and was diagnosed with Pancreatic Neuroendocrine Tumor in December of 2010. I had been getting progressively sicker over a period of years, with bizarre symptoms, flushing, rash that would lead to anaphylaxis. I was down to 85 pounds and nearly died. I had surgery at MD Anderson Cancer center in February of 2011. I was told NOTHING about my tumor, a PNET and the surgeon literally told me that “if your cancer comes back, we take it out”. No other info. 5 years later, after being told by a local oncologist I didn’t need any follow up, I was diagnosed with metastatic disease to my liver and had surgery to remove one lobe. Again I was told nothing about my type of cancer, and was told by an Oncologist the I was “way overreacting” to my new diagnosis when I was crying and upset. Again, I was told nothing about my cancer, and continued to fight these episodes of flushing, rash and fighting off anaphylaxis. My Dr ignored all of my symptoms, and did no further testing. Finally, a family friend who is a radiologist told me that my cancer was rare, and two weeeks ago I googled NETS and found a support site. I was finding information everywhere and literally stayed up the entire night on the internet researching my disease. I found Maryann’s name mentioned several times in patient forums, and everyone said to call her. I reached out to Maryann yesterday (July 13th) through Facebook. She said to call her the next day (today). I can honestly say, through the years rolling down my face, that this woman, a NET patient herself who has devoted her life to this disease is saving my life. At 2:30 in the morning, having no knowledge of any NET specialists in New Mexico, she had a name of a Dr who specializes in this disease, the information that the scan I have needed for years just started here, and I called and had an appointment with this new NET specialist, Dr, Heloisa Soares at UNM cancer center (where I had surgery for metastatic disease in 2016) in one week. I have been suffering with undiagnosed symptoms for years, and in a few hours I was on my way to finally getting the treatment I have needed for years. Maryann and her dedication to this rare cancer is saving my life. I was so sick and so tired of fighting this unknown disease for so many years that last year I was going to take my life. I am grateful that because of my two children I did not. I will dedicate the rest of my life to spreading the word about this cancer and helping and advocating in any way I can any other person diagnosed with this disease. I will be forever indebted to this organization and it’s founder for giving me expert Information and the relief that I have will finally have the knowledge and treatment I need. I say a heartfelt thank you to Maryann and all the people involved in this great organization. I only wish I had found them years ago.

Comments ( 1 )

carcinoidaware It was my great pleasure to help! Please keep us updated!

1 Geri M.1

Volunteer

Rating: 5

As a patient and a support group leader, I am blessed to have our group as a member of NCAN. Before I learned about NCAN I had a local independent support group that fell apart when I had personal health issues. With the help and support of NCAN we now have a local group that will be sustainable because of the invaluable information, training and support we receive.

1

Client Served

Rating: 5

I had the opportunity to attend NCAN's Chapter Leadership Training last week (04/13 - 04/15). It was an outstanding meeting in which I learned so much about the structure of a successful meeting. Most importantly, I gathered important leadership skills which I will utilize within our local group.

The agenda was well presented and followed by the speakers, presenters, patients and caegivers. The facilitator, Rick, kept the meeting running smoothly and adhered to the allotted time frame for each segment with breaks for meals. The sessions began and ended on schedule which requires skill when people are asking questions and sharing input. Rick managed to include everyone and each participant had the opportunity to be involved.

The presenters were very well prepared and knowledgeable in their area of expertise. As a patient, I am thirsty for information about Neuroendrocrine Cancer, a complex disease which is hard to detect, and treat. It is wonderful people, such as the speakers and presenters who participated in the meeting, that keep us informed and encouraged.

The meeting crystallized the importance NCAN plays in so many patients well being. Maryann and Bob Wahmann, the staff and volunteers are relentless in their passion to bring awareness to NET Cancer and to assist patients and caregivers on their NET journey.

The knowledge and skills I garnered at the meeting will be utilized to conduct our local chapter of NCAN support program and meetings in an empathic, knowledgeable and proffessional manner. The knowledge will be utilized to better meet each members needs and identify ways we can be of service.

Thank you to everyone that helped in making the meeting a success.
A special thanks to; Maryann, Bob, Patrice, Rick, Dr. WANG, Leigh Ann, presenters and all sponsors.

Paula Hurt
TN Chapter (NCAN)

Danielle G.2

Volunteer

Rating: 5

First time attending the NCAN conference. This is for chapter leaders. I have learned so much about myself, other people facing this cancer. Knowledge, tools, friendships. Amazing. Thank you Maryann, Bob, Patrice and Rick for taking me under your wing and tackle this cancer with awareness and love. Incredible Dr. Wang as well. He is a hero. Thank you again. Danielle

1 Annie M.3

Volunteer

Rating: 5

I attended the national patient conference 2 years ago when looking for answers and direction with a lack of such anywhere else. The information presented was invaluable and has led me in pursuit of not only obtaining the best care I can get for myself, but the ability to extend to others I come in contact with who may be looking for the same. Mad love and admiration for the founders and those involved in this foundation!

3 Connie F.1

Client Served

Rating: 5

In April 2013 I had exploratory surgery and diagnosed with stage 4 Neuroendocrine Cancer with primary small bowel and multiple mets. I was told if I had" to have cancer this was the best to have". I started searching for information ( being a nurse for 39 years I needed to educate myself). I came across the NCAN website. This website was so informative, educational and had lists of NET specialist. I did attend a National Conference and plan to go again in September. I give many thanks to NCAN for this opportunity to continue to be educated. So important for Zebras in fighting this cancer! The staff has always been helpful and kind to me.

1

Advisor

Rating: 5

Professionalism at it’s finest. Maryann, Bob and the rest of the board are always thinking of the patients first and how they can make Neuroendocrine Cancer better known in the medical community as well as the public. What a great cause!

1 Tom D LI

Client Served

Rating: 5

NCAN has been a lifesaver for me by educating me about my rare cancer and its treatments. Cancer is scary enough but I feel empowered by the knowledge that I have gained to have an informed conversation with the many doctors who treat me and the new treatments they offer. I am amazed at the high quality programs that they offer to patients, caregivers, and healthcare providers with minimal costs to participate. I am also deeply thankful for the many friends I have met through NCAN.

Previous Stories
3

Client Served

Rating: 5

I learned about CCAN after having surgery for a pulmonary carcinoid and have found them to be of enormous help in understanding the nature of my disease.

- Upon my first contact, I was greeted warmly and had many questions answered, including contacts of people willing to speak to me about their experience with this rare disease. I also received a large package with all types of information.

-Meetings are well focused and very informative.

-CCAN hosts a variety of conferences and other events that bring the top physicians in the field to educate patients and support people on the latest developments and answer questions.

- The management team at CCAN is very dynamic and is a major force in raising awareness about this rare disease at all levels.

Comments ( 1 )

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carcinoidaware 06/21/2011

Thank you for the wonderful review! See you in August for the conference. Stay well.

Client Served

Rating: 5

The folks at the Neuroendocrine Network are always very helpful. They provide much needed information and counseling on this rare disease. The conferences are invaluable for patients and caregivers.

Amanda Arnett E.

Client Served

Rating: 5

My mom was a Zebra (carcinoid patient) this organization has helped us empower ourselves to reach out and find the best possible treatment options and has provided support second to none. I hate to think where we would be with out the amazing conferences they organize. Thank you!

Maria S.2

Client Served

Rating: 5

After over 7 years of struggling with this dreadful disease and exhaustive searches for the right medical care NCAN came to the rescue. I attended one of their sponsored presentations in another state and within weeks found the best medical team I’ve ever encountered. I now have the care I need, that I can afford and a game plan for my future. I am no longer battling this disease alone. Forever indebted to this organization and the tireless, caring people who run it.

Sylvia Fletcher L.

Donor

Rating: 5

NCAN is an awesome nonprofit organization! The Neuroendocrine Cancer community doesnt receive funds from the American Cancer Society as the more common cancers do. So, it's phenomenal that NCAN spreads awareness for the medical community, patients, and caregivers through fundraisers, conventions, etc. Thank you Mary Ann and Bob for all that you do.

Lisa McCall B.

Client Served

Rating: 5

I was dx with stage 4 Neuroendocrine Cancer Jan. 2013. Having a long family history of cancer (none Net) I felt lost and hopeless. I had never heard of Neuroendocrine and frantically searched the internet. I stumbled across NCAN & reached out to Maryann who sent me a package full of helpful information. I sincerely thank NCAN & Maryann for giving hope to the hopeless!

Professional with expertise in this field

Rating: 5

Hi Maryann, I'm a nurse who works in adult oncology. I had a patient last night who found his way to us and a very important surgery because of you. I wanted to thank you for what you do and for the ginormous amount of hope and happiness you have brought to this man and his family's life. He was crying tears of joy for the way you changed the path of his life.
Thank you for what you do

Professional with expertise in this field

Rating: 5

The NCAN provides a very unique support for the many patients with neuroendocrine tumors (NETs). When diagnosed with a rare tumor such as a NET, good and unbiased information is hard to find. NCAN organizes outstanding patient-oriented conferences of excellent quality.

Karalyn

Client Served

Rating: 5

Maryann and Bob have changed this cancer. It was once so rare that no one even knew where to start to get help. Because of their consistent effort, hard work and passion for awareness, doctors and patients alike have a place to turn for help and guidance. Thankful for them daily!

Previous Stories
2

Client Served

Rating: 5

I would not be able to see the light at the end of all of the medical decisions we have to make if it were not for Maryann and her husband who put in countless hours for all of us. We have a navigation system in place that seizes to exist without their hard work. All of the information needed is gathered and shared openly and with a kind heart, they guide us to the information and help we need. Carcinoid has made us all connected and we have all learned that you must help one another. The medical world seems to be waking up to carcinoid and all the distinct care people need with this cancer. Without advocates like the Carcinoid Cancer Awareness Network INC, this would not be happening. Grateful for them everyday.

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General Member of the Public

Rating: 5

Top notch organization. NCAN has helped my family when my Mom was diagnosed back in 2007. We attended many of the conferences and received invaluable information from them. We took advantage of the hotline when we had questions and always knew we had a understanding and concerned voice on the other end. Thanks Maryann and Bob for all you do for the entire NET community. You are very much needed and appreciated.

1

General Member of the Public

Rating: 5

Wonderful information that was informative. Education for Neuroendocrine Cancer that is so much needed. I received my free packet in a very timely manner and refer to it often. Cannot thank this awareness network enough!

1

General Member of the Public

Rating: 5

I was first introduced to this organization by my BF who was diagnosed with this form of cancer. Despite being a health care professional I had never heard of this cancer nor its prognosis. I read the educational material and became involved with some of the websites and Facebook pages dedicated to this disease. I was very impressed with the sharing of medical providers treating this condition as well as the ability of members to openly share their disease process and ask others with this disease what treatment options they had experienced as well as what worked for them and what did not. My BF was very active in this community and well known by many for her educational push to learn more about this disease and share her education with fellow members. She attended the national conferences and was a spokesperson for this organization involving as many people as possible about Neuroedocrine Carcer Awareness. The disease took her last summer but through this network she left many to carry on where she left off.

General Member of the Public

Rating: 5

I was diagnosed with a lung carcinoid in 2014 from an incidental lung x-ray for another surgery. While recovering I was searching for support & found NCAN. I am very grateful to Maryann & Bob Wahman for starting this organization. I was able to learn more about this disease as well as meet alot of wonderful people.

Sharon Heuser